Starting Chemo May 2019
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Yeah, LaComattante, both taxanes, both with lots of SE. My doc said (and showed me research) that TC (taxotere) beats AC, and to make them more equivalent, you have to add T (taxol) to AC. They're both hard roads, I think.
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Hey everyone - thinking of you all and hoping all is going as smoothly as possible. I took a few days off from the computer so I'm just catching up. Lots of bumps in the road it sounds like. But everyone is persevering as best as possible!
Yesterday I walked with my card club girls in the annual walk for women's wellness (pic below). Our local hospital puts it on and the monies collected pays for mammos, support & prosthesis for those who cannot afford. We started doing this 9 years ago for a dear friend we lost to neuro endocrine cancer. It was interesting they gave us a statistic yesterday that one in 8 women will get breast cancer. Of the 8 you see in the photo - 2 of us have now had it.
Tomorrow is SPA day 2 for me! Trying to psych myself into it. I'll be 1/3 of the way done after tomorrow's treatment. WOOHOO I'm hoping I have better control of some of the side effects this time.
Wishing you all the best.
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Santabarbarian, "Sinead-ing around" that's hilarious! Love it.
Thank you, LaCombattante.
Alicesneed, great job on the walk for women's wellness! Sounds like an amazing program.
Neupogen to the rescue again! WBC went from 0.6 to 6.1 in three days. My ANC rose from 0.19 to 2.83. I have minor discomfort in my lower back and my right hip hurts. Totally worth it, though.
I get to go to the awards ceremony for my youngest daughter!
Have a great day everyone.
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Wonderful news, HappyAnyway
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Awesome HappyAnyway! That's fabulous. Enjoy the time with your daughter.
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Hi ladies, I'm scheduled to do my first chemo on Wednesday but who knows! My liver enzyme tests keep coming back elevated (tested 2x) so I feel so panicked about it. I had additional bloodwork to test for hepatitis but that came back negative. Tomorrow morning I have a PET scan and MO's office said they will have the results of that when I come in on Wednesday. I'm scared of chemo but I'm also scared that they won't give me chemo because of whatever is going on with my liver. I'm at work but can't concentrate, I just want to cry.
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Melza89 - so sorry to hear - the unknown is hard. Hang in there. Hopefully they will have answers for you soon. Maybe it's a fluke and you'll be lined up to get your chemo going Wednesday. I'll be thinking of you. Keep us posted!
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Melza89, I agree with Alicesneed. Sending positive thoughts your way. I find myself hoping that my labs will be good so I may receive my chemo treatments. I want them. For me, it's as much a mental fight as it is a physical one. We're here for you.
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UpstateNYer, I forgot to talk to the nurse about the Neupogen today. Thankfully, I will receive chemo on Friday. I am nervous about my WBC, though. Two treatments, two lows, progressively worse. I need to call tomorrow and express my concerns.
On a positive note, I had a wonderful time at the ceremony today. I'm a proud mama!
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hello all.. Happyanyway, glad you were able to attend your daughter's ceremony. No prob about forgetting to ask about the Neupogen. I wonder why they just don't have you stay on it if it gives such good results. I plan to take Claritin along with next Neulasta patch. Headache was unbearable after first chemo. Thanks for info on Amazon carrying the icing socks and gloves. Will have to look it up. Got my buzz cut today, as my hair was already starting to shed a lot.
Mountainmia- interesting article on icing to prevent neuropathy in hands and feet, thank you.
Alice- loved the pic of ladies from your wellness walk. Good for you and thank you
Santabarbarian- you always have such great insight and tips for the rest of us. Thanks to you.
For those with se's and other issues...hopefully things will get better. Keep the faith.
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Thanks UpstateNYer. I don't know if you also saw my link to tips for doing that. I pulled a few thoughts together in the header of the post.
https://community.breastcancer.org/forum/69/topics/871625?page=1#idx_16
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Funny, the only SE's I had were around the 8th and 9th day. I was somewhat nauseous and felt tired. Thank you. explains a lot.
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Hi everyone, I just found this group thought I'd join in I just started my chemo 1st one may 8th my 2nd is this Wednesday may 22nd. Im doing 4 rounds of AC then 4 rounds of taxol. I also tried cold capping and found that to be the worst part of the whole experience, I'm the person who is really distraught over my hair I know that's so vain of me but i have had long hair the last 20+ years, so i thought I'd try anything to keep it but now i don't know if i can do it it's do painful, I'm going to try one more time but i have a feeling im going to give up and send those things packing 😆
Anyways I'd love to follow along on this journey it's nice to have people with the same experiences to talk to 😊
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hello everyone ... I had my first treatment May 13th. Scheduled for 6 rounds TCHP every 3 weeks and 11 rounds of HP for being triple positive .. I had 2 lumpectomy, and yet the DCIS is in ever cell of tumor so MX is in my future, just do not know when.
I thought I did everything right during treatment, eat ice and ice hands and feet ... well I did. Just not enough, giggle... I got the debilitating mouth sores, uggg.
Beside being so very tired, seems all other side effects stay at bay as long as I drink and take Claritin 2x a day, so the bone pain is doable.
I am 1.5 hours away from my infusion center, so looking into At Home Hydration Infusions and one with High dose Vitamin C, positive research being done.
Also, I am fighting with Aethna Insurance Company for my Neulesta, they denied and want me to take some biosimilars called Udenyca, where there was NO trail done with BC patients, unbelievable.
Anywho, still trying to wrap my head around everything and Keep Moving Forward...
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HappyAnyway, thanks for clarifying the difference with the shots. I'm curious what my blood levels are. I feel ok other than the nausea and irregular bowel movements. I appreciate the info on the socks and mittens. I told my MO the only thing I am fearful of is the side-effects of all this treatment, he has been very helpful with tips, the claritin and aleve before, day of and day off the neulasta, over-hydrating, fasting, peppermint teas etc.. but no mention of cool socks.. Maybe bc we haven't hit the Taxol yet. And Happy Anniversary to you and your husband. 22 yrs for me and my hubby as well coming up in August. Highly likely we will be celebrating in the chemo infusion center as well
MountainMia. I agree, you are a wealth of information and I truly appreciate it. Hoping you find a treatment plan that your body tolerates soon, let's get this show on the road!
UpstateNYer: Glad you are walking as well, I slacked off due to exhaustion from the compazine, but I need to power thru that a little. A nice walk makes me feel better. I'm sorry we are both here getting the same treatment just a day apart, but it is helpful to connect and I find great comfort knowing you're out there walking the same road at the same time.
LaCombattante: hope round 2 is being well tolerated
SantaBarbarian: Thanks for the info on fast mimicking diet, the regular fast I can't do, but the mimicking I think I can. I just get too hungry
Love the Sinead-ing around... LOLI hope all others are doing well.
Hair, mine was really long, I took about 8 inches off and have a short bob right now. I'm actually loving it, I'll go shorter as it starts to shed. Nothing significant yet, but I have some soft caps ready and my wig for work and functions as needed. My MIL leaves today and my husband goes back to work today as well. He travels for work so I'm going to be fully on my own. Have a follow up appointment with by BS today. It'll be nice to see her. Haven't seen her since we went from 1 small IDC tumor/lumpectomy to synchronous bilateral breast cancer with a far more radical treatment plan. She's a nice lady and I think I'll find some comfort in just having an easy appointment with her, no more surprises. I hope
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I missed a whole page!
Alicenseed: wondeful you go out for a nice walk wtih some friends. Loved the pic and sounds like you are tolerating your chemo ery well
Meiza, nice to meet you and fingers crossed for the info on the liver enzymes. Hopefully that doesn't cause any issues and you just need to watch them closely
NugMug: nice to meet you as well. I was close to doing the cold capping, I had it ordered and the rep was coming to my house to drop it off and teach us. I had some time to realize, I didn't want to do it. I wanted to nap, relax and pamper myself during and after treatment, it was feeling like adding one more stressor to what was already stressful. I wish you luck though, if you continue. I also had very long hair. To my surprise, I love my short bob. Hopefully I love bald as well
KImH: sorry about the mouth sores, I've heard really good things about the IV therapy, good luck with getting that set up. I'll also be returning to the OR for a BMX when chemo is done, more cancer than we originally thought after the 4 lumpectomies. I was told it will be 4 to 6 weeks post chemo for that surgery.
Love and hugs to you all!
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and HappyAnyway.. such a treat you were able to attend daughters ceremony.
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Alicesneed, I am thinking of you today.
UpstateNYer, the Claritin should help. When's your next treatment? Rock that buzz cut!
Nugmeg, welcome. The hair. Ugh. I'm sorry.
Kimmh012, I have Aetna POSII. My Neulasta is covered. Do you have a different plan? My Neupogen requires approval every time. It's a hassle.
April0315, thank you. 22 years have flown by. I know it's early, but happy anniversary to you! I'm leaning towards a BMX, too. I'm having my genetics blood test today. I don't know if it will sway my breast surgery. I have extremely dense, fibrocystic breasts and triple negative.
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happyAnyway - thank you and I'm with you almost more mental than physical at times. I'm doing my best to stay positive but it can take its toll.
kimmh012 & nugmeg - welcome sorry you have to be here but it's a good group for support. Kimmh012 - I'm triple positive and taking TCHP also. First was 4/30 - second is today. I'm dripping away!
Hair loss. So when I first found out About my cancer I wanted to do locks of love but my hair wasn't quite long enough. So I had a bob cut right before BMX on 3/13 - loved the new cut. After first chemo MO said you are definitely going to loose your hair and it won't be as bad as you think.i asked her about coldcapping and she said don't waste your money. It doesn't reallly work. She said I would start loosing hair 3rd week after first treatment. So I shaved my head 2nd week and sent my hair to chemo divas and had a halo wig made. I just got it last week and truthfully I'm not sure I will even wear it. People gave me a lot of scarves but I think those make me look even more like a chemo patient. I like ball caps the best. Hair is falling out now - not fun but doing the transition helped. Had my little breakdown day before shave now doing pretty good
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Alicesneed, ball caps. Yep. When I'm out in the sun, I almost always have a cap on. No one would be surprised to see me that way. I did get a few other things, including an order from headcovers.com, so there are some things to choose from.
I met with MO this morning. He is an interesting man. I've heard he's very shy, and until he loosens up, not a very good communicator. This was the ? 4th time I've seen him, I think, and now he's much more helpful and even funny to talk with. He's also pretty clear about the limitations of research, for a number of reasons, which makes it hard to determine best care for people.
At any rate, I am switching from a TC x 4, every 3 weeks schedule, to a AC x 4, every 2 weeks schedule. He has told me before that TC > AC, but that was AC on the same schedule. But using dose dense (2 weeks,) they are very similar outcomes. He didn't try to persuade me to add taxol to my regimen, and we agreed to decide that later. Since my tumor was small and node-negative, but also triple negative with dense breasts, it is a much more borderline decision.
SO I'll do AC on Friday. Yippeee kiyay! And I'll have Neulasta OnPro.
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Yay! MountainMia! I'm happy that you have a plan.
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HappyAnyway, it feels weird to be so glad for this.
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Yay MountainMia! Great to have a plan and it sounds like things are going smoothly with your MO which is wonderful too. Gotta have confidence in our docs for sure!
Round 2 done for me - finished a little over an hour ago and hit with BIG TIME heartburn. Didn't have that last time. Ugh. Going to go lay down. Only got about 2 hours sleep last night due to steroids. Those hit me hard. 1/3 of the way done! I CAN DO THIS!
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welcome kimm and nugmeg. Kimm, I live in Rochester, so we are neighbors. Are you being treated in Rochester? You mentioned being 1.5 hours from infusion center. You will find so much support and a wealth of information on this board. So many of us, and there is strength in numbers where support is concerned.
Happyanyway- my next txt is May 29th. Yes, I am rocking my new buzz cut. Cold capping was not for me. My genetic testing is tomorrow.. Good luck with yours as well.
Mountainmia- glad your MO has a plan in place for you. Nice to have a good rapport with him. Hope will go well for you
April- wow, you have me beat having had 4 lumpectomies. I had lumpectomy with IORT and was supposed to be finished. My margins were not clear, so had a second lumpectomy. DCIS still showed on second one, so just before I was prepped and ready for 3rd surgery, surgeon came in and told me my onco score came back at 48 , so surgery was postponed! So now 4 rounds of C/T , another surgery to clear DCIS, then 4 weeks radiation. Genetic testing to be done tomorrow (after much prodding by me). If I am BRACA positive, am facing a double mx. Yes, hope no more surprises for either of us. My 40th wedding anniversary is also in August, the11th. Hopefully, will be feeling a lot better by then before rads start.
Alice- hope your heartburn subsides and you don't have anymore se's. Hope you can get some sleep. Prayers to you. Yes you can DO THIS.
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Upstate: yeah, it was a major surgery for sure. The one on the R we knew was IDC, the 3 on the L were biopsy sites that came back as ADH (BRCA testing was all negative as well) so the mastectomy conversation was never heavily on the table. Those 3 sites on the L we removed via lumpectomies) came back with 17 micro tumors of 5 different invasives. SO... the breast tissue needs to all come out. We have no way of knowing what more is in there (nothing showed on mammogram, US, MRI or 5 Core needle biopsies, Just the aDh). This triggered the chemo protocol, which shocked me more than anything, I just figured I needed another surgery and be done.
Anyway.. Haven't seen my BS since surgery, we have talked on the phone a lot, but it'll be nice to see her and say hello. No drama, no tears, no surprises, I don't even have any questions for her
She has a very calming effect on me so I'm looking forward to it.Happy to report my family has left, another round coming this weekend, but I'm enjoying some peace and quiet.
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MountainMia... what a relief to have a plan! Best of luck.
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This morning I was at the hospital waiting for my MO appt. The clinic suite is immediately downstairs from the infusion suite. While we sat there, we heard a bell ringing and cheering. My husband was confused, didn't know what that was. I couldn't speak because I choked up immediately. He figured it out quickly. I'm crying a bit now as I type this.
We'll get there, ladies. We'll get there...
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Thank you for all the support. I did my PET scan today as scheduled and my MO's office is still expecting me to come in for chemo tomorrow. They have not indicated either way if they want to cancel/postpone chemo because of my elevated liver enzymes.
For those of you who have had chemo postponed because of some abnormal test result, did they notify you before your scheduled session or did they wait for you to come in?
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melza, do you normally meet with your MO on the day of chemo? If so, perhaps they wouldn't notify you but would have you speak with the doc about it.
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good morning everyone ...
UPstater, I live in Norwich, NY and have Treatment in Syracuse NY...I am not sure which Aenta plan I have, but you best believe I am looking now. I am wondering if you could email me one of your EOB showing approved? Black out important stuff for sure!
Is there a way to get notices from this board? I have a hard time finding this each time.
I am sorry about the SE for everyone. I take Claritin 2x a day, seems to help. I also have the Transderm Scop patch and sea bands that are acupressure points on wrist. I have also noticed the more I drink and have small protein meals, the day gets better. I bought a shitton of Pedialyte packs, crystal light etc etc yet seems I cannot get enough hydration ... So I hope today I can get a script for At home hydration, fingers crossed.
Seems like everyday is a new side affect to challenge, besides fatigue, that's everyday LOL. Anyone get blurred vision? Mine comes and goes, annoying. Anywho, I have the Breast Coach App and tract my SE's.
I go to Onc today for WBC, today is my 10 day. I hope all is good because I am pretty sure I need. Root canal. Day after my 1st lumpectomy a filing feel out, had it fixed but now, wow the worst pain ever.
Along with cold therapy for hair, hands and feet, ppl also suck in ice to prevent mouth sores, which I did, just not enough I guess...
I found a lot of tips and tricks on the FB groups, there are 2 for Triple Positive and 2 BC women supporting women.
HAPPY ANNIVERSARY April, hope you have a great day.
Always An Adventure, Kim
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